Living with a Chronic Illness or Disability

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Our child has a chronic illness or disability. How can we help him learn to live as best as he can with his condition?

When you first learn that your child has a
disability or a
chronic illness, the news is often unexpected and can seem devastating. Many families experience a sense of powerlessness in the beginning at the prospect of dealing with a chronic illness, health problem, or disability and often feel very stressed at facing a future filled with unknowns.

Knowledge Is Power

As a first step, it is important for you and your child to try to understand your child's special needs, and try to find out as much as you can about her condition and its care. The more information parents and children have, the less frightening the present and future will seem. Knowledge is empowering. It can help both you and your child feel more in control of the condition and the impact and
effects on your child's life and on your family.

Information will also help you plan, guide and advocate for and with your child. Over time, you can teach him
(if possible) to manage his own condition and learn to be his own advocate through the potentially complicated pediatric and adult health care and educational systems.

Informing Your Child about His Condition

The type of information you convey to your child should be appropriate for your child's age and developmental abilities. You can gauge this best by listening to her questions.

Studies show, for instance, that kindergarten-age children typically view illness as quite magical: One child, when asked
"How do you get better from an asthma attack?" simply responded,
"Don't wheeze."

Young children who have diabetes may sometimes believe their illness is because of eating too much candy. Some children believe they have become ill and been hospitalized as punishment for not listening to their mother or father.

Beginning at about ages 10 to 12, children begin to grasp the complex ways that things can cause or be a factor in a disease or disability. By the fourth grade, children tend to believe that germs cause all illness. These older children may be capable of understanding more factual information about their condition.

Remember that as children grow up, their ability to understand information and take responsibility for their own care increases. Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly. All too often, the explanations and details about the condition discussed with a child and youth stop at the time of diagnosis

Helping Your Child Manage Stress

Stress is a part of life. It motivates us to succeed, but it can also interfere with life's joys and accomplishments. Children with chronic illnesses and disabilities often deal with more stress than other children. For example, they may have to cope with an imperfect body, frequent hospitalizations, painful injections, surgery, or even premature death.

A child with kidney disease who requires dialysis three times a week has regular and repeated periods of stress to address. A child with cancer, who must undergo repeated chemotherapy, often has to manage the fears and anxieties of each future treatment. A child with epilepsy may feel anxious about the possibility of having another seizure.

Unfortunately, there are no simple ways to help your child avoid these stresses.

Suggestions to Reduce the Negative Impact or Effects of These Stresses on Your Child:

Listen to your child. Whether she or he is feeling sadness, frustration, or rage, it is helpful for a child to express these emotions. A child should feel that she can share her thoughts and fears with you freely and without you overreacting or becoming upset. Ask how she is feeling if your child does not say anything. Be available and supportive. Listen not only to what your child says, but also try to hear what is left unspoken.

Inform your child about what lies ahead. Anxiety is often based on the unknown or on inaccurate beliefs about the future. Find out what your child does and does not know. Explain exactly what will happen during an upcoming doctor's appointment or hospital visit; if you are unable to answer all your child's questions, both of you should talk to the doctor. Do not expose a child to a frightening procedure unless she has been told about it ahead of time. Talking with other children who have gone through the same experiences can be very helpful.

"Rehearsal" can help children cope with new situations that appear frightening. Many hospitals can now arrange for children to spend time in the children's ward before they undergo surgery or other procedures. These visits can make clear to children about what the hospital setting is like and what to expect.

Encourage your child to spend time with other children with a chronic illness or disability that is the same or similar to your child's condition.

Frequently talk about the illness or condition so that your child feels comfortable being open about it.

Emphasize your child's strengths and support efforts to develop new strengths – the things she can do well despite the condition.

Help your child feel that he can be in control of some aspects of each health care related event or situation. Try to find choices that can be given to him, such as which arm to have blood drawn from, when a procedure will occur, or what reward he will get for cooperating.

Call your pediatrician for an appointment if you have concerns about your child's mood or behavior at home or school (i.e., sad, anxious, irritable, aggressive). Your pediatrician will want to talk with you and your child and determine if your child needs to be evaluated and treated by a therapist or counselor or other mental health provider.

Independence

Children's capacity for independence varies from illness to illness and child to child and will steadily increase with maturity. If your child has diabetes, you may have to test her blood sugar level and make sure insulin injections are given regularly during her younger years. If she requires a special diet, you will need to supervise food choices and eating habits closely. At the same time, watch for signals from her that she is able to assume greater responsibility, and help her take on more of the management of the illness little by little as she gets older.

Some children avoid accepting more independence and self-management of their condition. Families may not mean to but foster dependency because they find it easier to maintain responsibility for their child's care, rather than teaching the child to perform certain tasks and relying on her to do so. Also, some children may enjoy being the object of their parents' special attention. They may relish having certain tasks' performed for them, and may resist taking responsibility.

It is critical to help your child come to terms with his health condition and accept developmentally and age appropriate responsibility for caring for himself. Try not to deprive your child of the important and rewarding experience of mastering day-to-day tasks; it instills pride and self-confidence that prepares him for adult life. Praise his efforts at assuming responsibility, and applaud yourself for having the wisdom and courage to let him take these very important steps.

Self-management skills should also be more formally assessed and encouraged in youth starting at age 14 years of age with your child's pediatrician. Youth should help develop a shared medical summary and emergency care plan with their health care providers and develop linkages to any needed community-based supports. Parent and youth should also begin to address issues of legal decision-making and guardianship as appropriate with their providers starting at age 16 years of age. Youth and families should also ask about options for adult health care providers and the process for transferring care.

Your Pediatrician Can Help

Discuss any of your concerns and any limitations with your child's pediatrician. Using your doctor's input, develop some guidelines for sensible restrictions if needed while also encouraging your child to participate in a diversity of activities and gain more responsibility for their care. Parents need to recognize their children's changing needs and to plan for them. It is also important for parents to be educated and up-to-date about their child's illness or disability and about new treatments and their effects.

Most children with chronic illnesses or disabilities do well in school, develop appropriately and achieve their goals in much the same way that other children do. Most are healthy children who happen to have a chronic illness or disability. While their illness may create certain difficulties, with the support of their parents and other
community based services as needed most lead happy, effective and exciting lives and grow up to become productive adults.

The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.